Madeline and her family have been supported by the charity Genetic Disorders UK, which is dedicated to improving the quality of life for people and families affected by genetic disorders.
Click above to watch ITV News Anglia's Jonathan Wills interviewing Laura Pattison from the charity.
More top news
Striker Dean Bowditch has confirmed he will leave MK Dons at the end of the current season.
Solid Citizen is our new summer series - and we need your help to tell the stories behind your favourite statues.
Two of England's world cup heroes are backing the fight against dementia in tribute to their teammates who are living with it.